Because there is so much crazy information floating around the internet, I tried to only stick to reputable websites or other heart family support groups and blogs.
I have found Mayo's website to be very informative in explaining Hypoplastic Left Heart Syndrome.
http://www.mayoclinic.com/health/hypoplastic-left-heart-syndrome/DS00744
Wednesday, August 22, 2012
Tuesday, August 21, 2012
Dates have been set......emotional day
Yesterday at my OB appt, we discussed induction dates. The appt went well and baby girl appears to be growing well. Her heartbeat sounds good...considering....
Today I got a message from my OB that she had gotten a hold of our cardiothoracic surgeons office, our pediatric cardiologist's office and the hospital labor & delivery unit and NICU. They are all on board for an induction date of October 4th. Our little peanuts first open heart surgery is tentatively scheduled for October 8th. Of course if necessary that will change based on her needs.
It's a relief to finally have the dates set, but at the same time it makes it that much more of a reality to me. I've been so busy lately that I haven't allowed myself much time to ponder or worry about our little girl's future. Today that all came to a screeching halt. After I messaged immediate family members and a few close friends about the dates, I started to receive text messages back from them with encouraging words and well wishes. As I'm reading through them and watching our two older kids play in the back yard, the tears started welling up. The fear creeps back in and the doubt starts to take hold. I know I need to stay positive, but I'm not perfect and there are some days that I wonder.....Why us? Why our baby? Why any baby at all? Why such a complex heart defect? Will she grow up to live a happy life? Is our family strong enough to handle this? But then I have to stop myself b/c what good comes out of that. Instead I will end on the note that we have a large support system. Our baby girl IS strong and will continue to be strong. We will all fight together to keep our little girl healthy and get her heart working to the best that it possibly can with her diagnosis.
Today I got a message from my OB that she had gotten a hold of our cardiothoracic surgeons office, our pediatric cardiologist's office and the hospital labor & delivery unit and NICU. They are all on board for an induction date of October 4th. Our little peanuts first open heart surgery is tentatively scheduled for October 8th. Of course if necessary that will change based on her needs.
It's a relief to finally have the dates set, but at the same time it makes it that much more of a reality to me. I've been so busy lately that I haven't allowed myself much time to ponder or worry about our little girl's future. Today that all came to a screeching halt. After I messaged immediate family members and a few close friends about the dates, I started to receive text messages back from them with encouraging words and well wishes. As I'm reading through them and watching our two older kids play in the back yard, the tears started welling up. The fear creeps back in and the doubt starts to take hold. I know I need to stay positive, but I'm not perfect and there are some days that I wonder.....Why us? Why our baby? Why any baby at all? Why such a complex heart defect? Will she grow up to live a happy life? Is our family strong enough to handle this? But then I have to stop myself b/c what good comes out of that. Instead I will end on the note that we have a large support system. Our baby girl IS strong and will continue to be strong. We will all fight together to keep our little girl healthy and get her heart working to the best that it possibly can with her diagnosis.
Surgery date tentatively set.....
About a week ago I received a call back from the cardiothoracic surgeons office regarding induction and surgery dates. I wanted to discuss with them what their schedule looked like around my due date so that I could discuss induction dates with my OB. The surgeon's nurse told me that she already had October 8th and/or 9th blocked off for our daughter's surgery and that would put possible induction dates at the 3rd or 4th. Beings that my husband and my 8 year anniversary is on the 9th, I asked for her to aim for the 8th, but that the most important thing is that our little one receives her surgery when she needs it. We didn't care what day. She let me know that her surgery is top priority, so she will definitely get it when she needs it, even if it's not on the 8th. She also gave me the contact for the Child Life worker at the hospital for us to contact so that we can set up a time to visit the Labor and Delivery floor of the hospital and also visit the NICU. Kind of dreading that day, b/c I know it will make it all the much more of a reality to me.
2nd Echo
Our second fetal echocardiogram was done on July 27th with Dr. B again. Not much has changed overall with her heart other than her left side of her heart being considerably smaller than her right side since the left side is no longer growing. Also noted was that she has significant endocardial fibroelastosis and essentially mitral and aortic valve atresia. Which basically means that there is a lot of "scar tissue" and there is no mitral or aortic valve opening demonstrated.
Dr. B felt comfortable that we did not need to be seen again until delivery day. He is on board with me being induced up to a week early so that everyone that is needed is present when our little girl arrives. So for now we continue with our regular OB appts and wait til our little peanut arrives.
Dr. B felt comfortable that we did not need to be seen again until delivery day. He is on board with me being induced up to a week early so that everyone that is needed is present when our little girl arrives. So for now we continue with our regular OB appts and wait til our little peanut arrives.
Sunday, August 19, 2012
Normal vs HLHS
Here is a side by side image of a normal heart compared to a Hypoplastic Left heart. The image also shows how each surgery will change the anatomy of her heart so that it is able to pump blood to her entire body.
Tuesday, August 14, 2012
What's up ahead....
As we look up ahead at what is to come, I have mixed emotions. As any pregnant mom, I'm excited to meet our little one, but at the same time I am fearful. Right now our daughter is safe. Her heart doesn't have to work as hard while in utero. The placenta and umbilical cord are her life line right now. It is difficult feeling her move and knowing she is growing stronger each day inside me, just as our other two kiddos did, but also knowing that she only has half of a working heart. As each day passes, I know that we are that much closer to the inevitable. Knowing that our daughter has to have medicine (prostaglandins) right after birth to keep her ductus arteriousis open. Although you want this to close in a heart healthy baby, in a child with HLHS, it can be fatal if it closes. Because the left side of her heart is unable to pump blood to the body, this duct is the only way for the rest of her body to receive any blood. Unfortunately it just buys as a little time to get her lungs stronger and hopefully her a little more stable while they prepare for her Norwood. Generally within 4-10 days of birth, sooner if needed, our daughter will have her first of at least 3 open heart surgeries. The Norwood is the most complex and highest risk of the 3 surgeries she will have to endure. Survival rates are around 70-75% percent for the Norwood. Not the best, but much better than close to 20 years ago when they were just coming out with these surgeries and survival rate was 15% or less. After the Norwood, the survival rate goes up to close to 90% for the Hemi-Fontan and the Fontan. Of course we are preparing ourselves for the many obstacles and complications that we are sure to come, but we are holding out hope that our little girl will be strong and able to make it through each of her surgeries and recoveries with flying colors. She has so many people rooting for her. Until my next post, here is a link that explains HLHS and the 3 stage surgeries better than I can do. Hopefully the link works, I'm still new to all this. Until next time.....
http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html
http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html
Friday, August 10, 2012
June 15, 2012
The day we found out what was wrong with our little girls heart. Chris and I chose to have his mom with us for this appointment. As a former cardiac intensive care nurse, we knew she would be able to understand all the terms that would be thrown at us this day. We went into this appt. optimistic. After our ultrasound at my OB's office, we got the chance to sit down with Chris's mom and explain what the OB's office was able to see. Lori has seen many repairs on hearts and reassured us that almost anything on the heart can be fixed medically these days. It will still be a hard journey, but most everything can be fixed. Of course we were under the impression that it was just a small hole in the middle of her heart and some calcification. Little did we know that it was way worse than that.
As I lay on the u/s table for around 30-45 minutes while "Dr. B", our pediatric cardiologist, did our fetal echocardiogram; there was complete silence in the room. He told us in advance that he probably wouldn't say anything throughout the echo, so not to be alarmed. It felt like an eternity. To top it off, our little peanut was still laying with her spine up and the Dr. wasn't able to see everything he wanted to. So off I went to walk the halls while he examined the information that he had received so far. Chris and Lori (his mom) stayed in the u/s room and attempted to keep the mood light. After about 15 minutes, Dr. B had me go back to the u/s room to see if our little girl had moved any. Spent another 10-15 minutes on the table while he tried to get a few more images of our little girl's heart. One thing he did mention at the end of the echo was that he couldn't see her aorta. When he was done with the fetal echo, he told us we would go across the hall to a patient room to discuss his findings. Before we left the u/s room he said "I'm not going to sugar coat it, it is serious" or something along those lines.
As we sit in the patient room waiting for Dr. B to come in I start to ask Lori questions and prepare myself for what he has to say. I'm asking my mother in law, "what if she needs a heart transplant or worse, what if they can't do anything for her at all". She was able to calm my nerves a bit as she reminded me that those options would be very rare.
Then the Dr. came into the room. He handed us a diagram of a normal heart and then gave us one of the heart condition he was diagnosing our daughter with. He told us that from all the imaging he was able to get, it appeared to him that our daughter had Hypoplastic Left Heart Syndrome. When I saw the color pretty much drain from my mother in laws face, I knew this was not a good diagnosis to receive in terms of heart defects. He told us that basically the left side of our daughter's heart is severely underdeveloped and not functioning. The white spot in her heart that was thought to be calcification is not calcification at all and is actually called endocardial fibroelastosis (he gave us an easier to understand term for it at the appt., but I can't remember what it was). Basically if I remember correctly how he explained it to us was that it was a thickening of the inner lining of the chambers of the heart from extra tissue, kind of like scar tissue. This condition effects how her heart pumps, therefore leading to her left side of her heart not developing appropriately.
Unfortunately, b/c the surgery for Hypoplastic Left Heart Syndrome has only been around for 20 years, there isn't a lot of information about long term outlook for HLHS kids. The oldest living patients w/ HLHS are in their early 30's. He made it very clear to us that HLHS is by far one of the most complicated heart defects a child can have. Dr. B said that there is no cure or fix for HLHS. All they can do is repair her heart in a way that will re-route how her heart pumps. She will always only have half a heart. High intensity sports probably won't be an option for her, but every child is different. Chances are she may need a heart transplant later in life and her heart weakens from only pumping with a single ventricle. Survival rates if I remember correctly are around 70%. However the survival rate for each surgery varies.
We were given 3 options for "treatment".
1) Compassionate Care - Take her home and let her live out her days at home. She would probably pass away within a week.
2) Put her on a transplant list - Donor hearts for newborns are hard to come by and chances are she would die waiting for a heart.
3) Series of 3 open heart surgeries. Norwood at 4-10 days after birth. Hemi-Fontan at around 4-6 months of age. And the Fontan anywhere from 18-36 months of age.
We chose the 3 surgeries. We can't imagine life without our daughter and feel that she deserves the right to show us how strong she is. We will hope and pray that she stays strong enough to undergo all of this and we will do our best to make sure we give her the very best life possible. This was by far the hardest day of my life. After leaving the pediatric cardiologists office, I called my mom and lost all composure. How do you deal with learning that your baby only has half a heart.
(This post is already long enough as it is so I will be sure to make another post about the aftermath of learning our daughters diagnosis and where to go from there. More info on the surgeries at a later date as well.)
As I lay on the u/s table for around 30-45 minutes while "Dr. B", our pediatric cardiologist, did our fetal echocardiogram; there was complete silence in the room. He told us in advance that he probably wouldn't say anything throughout the echo, so not to be alarmed. It felt like an eternity. To top it off, our little peanut was still laying with her spine up and the Dr. wasn't able to see everything he wanted to. So off I went to walk the halls while he examined the information that he had received so far. Chris and Lori (his mom) stayed in the u/s room and attempted to keep the mood light. After about 15 minutes, Dr. B had me go back to the u/s room to see if our little girl had moved any. Spent another 10-15 minutes on the table while he tried to get a few more images of our little girl's heart. One thing he did mention at the end of the echo was that he couldn't see her aorta. When he was done with the fetal echo, he told us we would go across the hall to a patient room to discuss his findings. Before we left the u/s room he said "I'm not going to sugar coat it, it is serious" or something along those lines.
As we sit in the patient room waiting for Dr. B to come in I start to ask Lori questions and prepare myself for what he has to say. I'm asking my mother in law, "what if she needs a heart transplant or worse, what if they can't do anything for her at all". She was able to calm my nerves a bit as she reminded me that those options would be very rare.
Then the Dr. came into the room. He handed us a diagram of a normal heart and then gave us one of the heart condition he was diagnosing our daughter with. He told us that from all the imaging he was able to get, it appeared to him that our daughter had Hypoplastic Left Heart Syndrome. When I saw the color pretty much drain from my mother in laws face, I knew this was not a good diagnosis to receive in terms of heart defects. He told us that basically the left side of our daughter's heart is severely underdeveloped and not functioning. The white spot in her heart that was thought to be calcification is not calcification at all and is actually called endocardial fibroelastosis (he gave us an easier to understand term for it at the appt., but I can't remember what it was). Basically if I remember correctly how he explained it to us was that it was a thickening of the inner lining of the chambers of the heart from extra tissue, kind of like scar tissue. This condition effects how her heart pumps, therefore leading to her left side of her heart not developing appropriately.
Unfortunately, b/c the surgery for Hypoplastic Left Heart Syndrome has only been around for 20 years, there isn't a lot of information about long term outlook for HLHS kids. The oldest living patients w/ HLHS are in their early 30's. He made it very clear to us that HLHS is by far one of the most complicated heart defects a child can have. Dr. B said that there is no cure or fix for HLHS. All they can do is repair her heart in a way that will re-route how her heart pumps. She will always only have half a heart. High intensity sports probably won't be an option for her, but every child is different. Chances are she may need a heart transplant later in life and her heart weakens from only pumping with a single ventricle. Survival rates if I remember correctly are around 70%. However the survival rate for each surgery varies.
We were given 3 options for "treatment".
1) Compassionate Care - Take her home and let her live out her days at home. She would probably pass away within a week.
2) Put her on a transplant list - Donor hearts for newborns are hard to come by and chances are she would die waiting for a heart.
3) Series of 3 open heart surgeries. Norwood at 4-10 days after birth. Hemi-Fontan at around 4-6 months of age. And the Fontan anywhere from 18-36 months of age.
We chose the 3 surgeries. We can't imagine life without our daughter and feel that she deserves the right to show us how strong she is. We will hope and pray that she stays strong enough to undergo all of this and we will do our best to make sure we give her the very best life possible. This was by far the hardest day of my life. After leaving the pediatric cardiologists office, I called my mom and lost all composure. How do you deal with learning that your baby only has half a heart.
(This post is already long enough as it is so I will be sure to make another post about the aftermath of learning our daughters diagnosis and where to go from there. More info on the surgeries at a later date as well.)
Tuesday, August 7, 2012
Everything happens for a reason....
...that is what they say anyway. My high school best friend used to say it and as an adult I hear it all the time as well. Most of the time you don't know the reason, but sometimes it seems so obvious that you have to believe that someone more powerful than you had a hand in it. As I sit and contemplate everything that has been thrown our way recently, all I can do is sit back and wonder.
A little back story: Memorial Day weekend two years ago. We got a call that my husband's dad was very ill and we needed to take him to the hospital about 3 hours away to receive care. Off we went, both our kids in tow and ended up sitting in the ER from 7pm til 2am with our kiddos and their grandpa. He ended up being misdiagnosed and sent home a couple days later, only to be life flighted back to the hospital a day after being discharged. From there, things took a turn for the worse and he spent around 4 months in the hospital. More than once my husband was told that he needed to call in his family b/c they didn't expect his dad to make it. For the most part, my husband was by himself out there with his dad and making medical decisions on his dad's behalf since he was on a ventilator and couldn't make them for himself. It was lots of time off work for my husband, time away from his wife and kids and lots of money on gas and food while he went back and forth and slept in the waiting room while he was there. Not to mention the emotional toll it took on my husband. Such an emotional time for all of us. Luckily, his dad is still with us today and beat the odds. The doctors did not expect him to live, but he did. Miracles do happen. He now lives on his own and is a much better grandpa than he was before his health scare. It brought us all closer as a family. Maybe there was a reason behind him getting so sick. We thought at the time that it was the hardest thing we ever had to deal with and couldn't wait to catch a break. Little did we know that this was just a prep for what was really in store for us.
Fast forward: Memorial Day 2012. We lost one amazing woman on this day. Chris's grandma passed away. She was such an amazing and strong woman and our kids adored their great-grandma. She was my husband's last living grandparent. We are saddened that our unborn daughter will never get to meet her Grandma Lorraine.
Four days later - the day of Gma Lorraine's visitation. We had an ultrasound scheduled for 3:30 pm that day and then we were going to head straight to the visitation. I was 21 weeks along. Because Chris's sister was born with Down Syndrome and had a hole in her heart at birth, we had a Level 2 u/s to check the heart for any defects. The u/s ran late and it took two techs. My husband caught on that something was wrong, but I was oblivious. Needless to say, all the techs said was that they couldn't get a good picture of our little girls heart b/c of the way she was laying and that our doctor would talk it over with us. And here comes the smack in the face.....my OB told us that there was something wrong with our daughter's heart. The u/s pictures weren't very clear or detailed, but it looked like there was a hole in the middle of the heart and some calcification on the top. She referred us to a pediatric cardiologist to get a fetal echocardiogram done. This appt would not be til June 15th, when I was a little farther along. Facing the family that night and trying to deal with all the emotions from this and the emotions from losing our grandma was a little to much for us. We made it through, but it was not easy.
Everything happens for a reason:
- Chris's dad gets sick, and a year later on the same holiday, we find out even more terrifying news about our unborn daughter.
- Since this is our last child, I decided to switch OB clinics to receive a more personal experience. And boy did I get it. My OB is one of the most amazing and caring doctors. She also just so happened to graduate high school from my home town with my oldest brother. I switched on a gut instinct, and now I know that the reason was b/c I would need her standing by my side to help me through this pregnancy and diagnosis.
- My mother in law is an RN at the hospital where we are delivering our little peanut. She worked many years as a cardiac nurse in the cardiac intensive care unit. She has worked alongside the pediatric cardio thoracic surgeon that will be doing our daughter's surgery.
When I look at those 3 things listed, I can't help but realize that things really do happen for a reason. I still don't know what the reason is for us to become the parents of a heart baby or why God chose us. All I know is that we have a rough road ahead, but we also have a large support system. All we can do now is hope and pray that our daughter is strong enough to pull through all her surgeries and live a happy life with her big sister and big brother that can't wait to meet her.
Gotta start somewhere
I guess I have to start somewhere, so here goes. This blog is being created as a way to share our story with family and friends as we go through the scariest journey of our life. I guess there is a saying "expect the unexpected" for a reason. Our unexpected happened when we received the news that our unborn daughter had a heart defect. And not just any heart defect, hers is one of the most complicated as they come. Our daughter has been diagnosed with Hypoplastic Left Heart Syndrome. (more on her diagnosis to come in later posts)
I have always been better with my thoughts and emotions by writing them down, and after much thought and discussion, have decided that a blog is the best way to let everyone know how our little peanut is doing throughout her heart journey. And frankly, I know I will be an emotional wreck come October when she makes her debut, so this will be easier to relay information than having to repeat ourselves over and over again. I think that would be to much for me.
We know that this is going to be the toughest journey of our life so far, but our hope is that not only our blog will keep family and friends informed, but also help other families that receive the same diagnosis. In my search to find answers after receiving our little ones diagnosis, it was other "heart family" blogs that reminded me to keep the faith and have HOPE.
I have always been better with my thoughts and emotions by writing them down, and after much thought and discussion, have decided that a blog is the best way to let everyone know how our little peanut is doing throughout her heart journey. And frankly, I know I will be an emotional wreck come October when she makes her debut, so this will be easier to relay information than having to repeat ourselves over and over again. I think that would be to much for me.
We know that this is going to be the toughest journey of our life so far, but our hope is that not only our blog will keep family and friends informed, but also help other families that receive the same diagnosis. In my search to find answers after receiving our little ones diagnosis, it was other "heart family" blogs that reminded me to keep the faith and have HOPE.
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